Wednesday, September 29, 2010

"holla"



Today as I was pulling away from my moms house, Linley screams out the car window "Holla at a playa if you see him on the streets, Nana!". Seriously. Was I surprised? Nah, I love the word "Holla" and have even gone so far as to encourage Linley to follow up the word "Dollar" with "Holla" each time because I believe somewhere down the line she may have a career as a rapper. Okay, that's not really true but I do think she is awfully cute with her street cred.

Perhaps she has been throwing this street lingo out at school and really impressed the teacher. I say this laughingly because Linley was just named Student of the Month at her elementary school because apparently she exemplifies being Responsible. And she is. I love that she wants to be in charge and helpful and I love that her teacher is encouraging Linleys ability to do what is expected of her with a cheerful heart.

Once again I am reminded of how blessed this sweet 5 year old has made me. And if she makes mad cash as a rapper while balancing her spouse and children and home, I will be a very, very happy "playa".

Saturday, September 25, 2010

"Hey, its okay" (but it is not) Friday (anymore)

Here's to me missing my very first self imposed deadline for this "hey, its okay". In my defense I went to a cookout and relaxed instead. It was lovely.

But, "hey, its okay"...


*to visit the grocery store Every.Single.Day because for some reason it is the only place that Piper is contented this week

*to sign "Mommy" on your new library card and not realize it for an entire month

*to laugh at the new clothing called jeggings

*to secretly try on a pair of jeggings at old navy

*to find out that jeggings are just fancy leggings and are fantabulous

*to think the magic erase marker is seriously magic

*to mentally kick my husband every time I cannot find the covers in the middle of the night all because he has some strange aversion to foot boards

*to wear my cowboy boots to a "business casual" luncheon...and I am certain that my mother will be most disappointed. She does not love said cowboy boots.

Wednesday, September 22, 2010

Flagpole magazine

My Piper is a Star. Our local paper found out today...she was written up by a dear friend of ours who is also a journalist. (pick your friends wisely, eh?)

So here it is. A little glimpse into the last year. And what a year it has been. And what amazing little girls I have. And what a blessing that today I am able to acknowledge this amazing little life I have.

http://flagpole.com/Weekly/Features/SurvivingTogether-22Sep10

Monday, September 20, 2010

Light the Night 2010


Piper has been through so many sedation's that I have lost count, and yet somehow I never will be accustomed to watching that sweet girl fall asleep in my arms. Each time she will have exhausted herself sobbing from being hungry and each time I will hold her as the doctor injects her port with enough sedatives to allow her to sleep through the powerful chemotherapy medications pushed into her spine. And every single time she wakes up, drinks some milk and smiles and walks her way out the door. Simply Amazing.

Today was her weekly clinic visit. All of her numbers look wonderful and strong. I cannot explain the shortness of breathe I get every time they prick her little finger and I await the results. So far, God has been gracious to us and I am praying every day that He continues to protect not only her but our family, from having to encounter this monster again.

On October 1st at 5:00pm here in Athens we are joining the Leukemia and Lymphoma Society at Light the Night. Light the Night is the annual fundraiser for both children and adults who have been affected by these forms of cancers. Donations and support are necessary to provide the means to continue to do research. If anyone is interested in walking with us or donating to our team please let me know(sus581@yahoo.com). Our team name will be Perfectly Piper.

We look forward to seeing those of you who are supporting us!

Friday, September 17, 2010

"Hey, its okay" Friday

It has been a week. Piper thinks my hip and a nasal whine fits the bill for every occasion. Chad has had some very late nights and big tests. And sweet Linley is confused about why she isn't special enough to be "student of the week" yet...she IS kind, she tells me.

And so...Hey, its okay...


*to have a crush on Doug Heffernan And see a little of your own self in Carrie Heffernan, sadly. And if you have never watched King of Queens then you should feel guilty for that one yourself.


*to not be a lazy mom just because you think that kindergarten should never, no not never ever start at 7:40am.


*to stay up til the early hours of the morning because you need that blessed "me time" more than the actual sleep time.


*to allow your 1 year old to totally unwrap the toilet paper in the bathroom because for 5 blissful minutes she was playing by herself and NOT on my hip.



*to trash dinner and grab Wendy's because the fire alarm keeps going off and all you are trying to do is boil water.



*to yell at the young cat on campus out who walked right in front of my car and then flicked me off. I called him "buster" if you must know...


*to really, really, really hope that business casual actually means "ladies, wear those comfy yoga pants!".

Wednesday, September 15, 2010

Same time, last year.

This time last year was our last night of "blissful ignorance". Chad and I, while spending the night at the local hospital, had no idea how awry our life was about to be. We had no idea that the next morning our daughters pediatrician would walk into the room and tell me, with his own tears in his own eyes, that our Piper was being diagnosed with Leukemia. That is all we knew. Chad and I spent the next few hours waiting for transport to take our sweet 10 week old daughter to Scottish Rite in Atlanta...we had no focus, we had no strength or semblance of mind to call anyone for help, we had no earthly idea what Leukemia meant for our baby. Oh, but we found out.

Neither of us were allowed to transport with Piper, so we got into our sedan and followed 4 strangers in a strange truck as they lead us into a world we were grasping to comprehend. The entire drive there I looked out the window and remember watching the rain pour and the leaves wallow and sobbing. Then I would reach out for Chad and he would sob. We spoke so very little, not because we didn't want to but because we couldn't. Simply.Could.Not.

At the hospital we were told to ask for the Aflac floor, so we did. The pity on the ladies face at the front desk was paralyzing as she pointed us down the halls. We both rushed past the Aflac Cancer and Blood Disorders Services wall sign and reached our daughter as she was being settled into a crib and surrounded by nurses who would soon become my confidants, friends and caretakers.

I say that I do not remember the next few days. But, I remember tests being done. I remember holding her and wanting to know what was going on. I remember asking questions when there simply were no answers to be given. I remember Linley showing up and dancing around, oblivious. I remember being told to shower. Being told to sleep. Being told to eat and drink. I remember those of you who came and held me, or called me and listened to me alternate between confidence and pure hysteria. I remember the letters that flooded the room. I remember waking and feeling that gut wrenching, mind numbing realization flood my soul again. I remember walking the halls. I remember holding Piper, kissing Piper, sobbing over Piper. I remember calling Linley and feeling so very, very far away. I remember looking at my husband and being terrified at what this meant for us. I remember not having any energy to pray but dreaming night after night of my God sitting in the chair besides me sobbing as I was because I was His child and I was suffering. I thought I remembered so little.

This night a year ago I rocked my baby girl to sleep, resting myself, assured that whatever had brought us here was simply being fixed and wondering if I had remembered to take the trash out before leaving the house the day before.

I have never been one for cliche phrases but this was the day my family lost our innocence. We had very little in this world and that was what we clung to...and it was stolen. In its place I have gained Peace. Being Loved. Being Held. Faithfulness. Hope. Most of all has been the grave understanding that we DO live in a fallen world. My daughter and my family are proof. But my God has sobbed with me. And He is still loving us, holding us, showering us with His sweet Peace and Hope.

That is what has remained. For 12 long months we have struggled. We have looked at ugly in the eye and chosen beauty. I still choose the beauty that my God has in store for my family and I chose to remember the details of Pipers last day of innocence because it is there that I am strangely able to truly remember my Gods unfailing and unwavering Goodness.

Saturday, September 11, 2010

"Hey, its okay"

I am a firstborn, a wife, a mother and a perfectionist. In a nutshell, I have a lot of guilt...lots. And I have lots of opinions as well. Lots. (ask around, its undeniable) One thing that I wish I had the energy to be guilty about is reading Glamour. But I dont. I need to know what is going on with Justin Beiber (who else knew that "Baby, Baby" was sung by a BOY???), what fashions are going down on Rodeo Drive (because truthfully, behind my black flip flop collection I have many pair of Jimmy Choo shoes...no, I don't know who he is either.) And really, being as conservative as I am, I just need another source in which to bring up new opinions about life. That part is partially true.

So while I neither wear Jimmy Choo shoes (who IS that???), listen to little boys sing soprano or hold back from questioning the way others do things, I do often feel guilty. Thankfully, my God covers my guilt and opinions with Grace, but sometimes I just have to laugh at myself. And Glamour has a running article called "Hey, its okay" in which other ladies (probably first born mothers like myself) can write in on something that was done that they are choosing to laugh at themselves for...and hopefully feel a little less guilty about.

Here's hoping. I am going to do this about 1x a week. (Or every day when life gets a little too much.) Feel free to post your own "Hey, Its Okay" and I promise not to judge you...but I may feel guilty right along with you, friends.

So...Hey, it's okay:



*to deliberate for a minute about taking your daughter to the ER when your older daughter beans her in the head with a piece of brick, because you have already been at the hospital 3 times that week



*to think that rompers belong on my 5 year old not the college chicks around town


*to sit outside and drink a beer instead of doing the dishes


*to wonder just why Rod Stewart is having a 7th child at 65 years old???

Monday, September 6, 2010

I dont like to think about that.

...and to be clear, I do not intend this to be a whiny, complaining tirade. Lets just remember that it is simply one more attempt of my own to chronicle this journey with utmost honesty.

My Piper looks a wee bit like a refuge. I don't mean that lightly or laughingly but truthfully. Between the multiple daily puking and the lack of appetite from high dose chemo, she has lost about 2lbs. This isn't much on an adults frame but she had securely held her own throughout the first 7 months of treatment. At her 1st birthday she was right under 17lbs, small but decent given circumstances. At her visit last week she weighed in at 15lbs. And she looks it. I have had to dig out her 3-6month clothing. Her little ribs show, as does her port. She has lost those fantastic cheeks and just plain looks like a kid who is fighting cancer. I don't like thinking about that.

Perhaps this hit me today because I was kissing on my 2 month old nephew Gunner today. Gunner is delicious. He is a roly-poly little guy with cheeks worth nibbling on. And he is a very healthy 15 lbs. The same as Piper. I also got to kiss on my cousin Wades little girl Alaina, who is almost 4 months old and had to pinch away some of my tears a few times. She was so healthy. So vibrant. So vibrantly healthy. She spent the day smiling, drooling and rolling over. Piper at 4 months old was lethargic in the bed. I don't like thinking about that.

What I do like thinking about is that we are nearing what is supposed to be the end of the rough stuff. I have no idea what to expect after the next few weeks of weekly chemo ends and we begin maintenance. Supposedly she should begin feeling better, thus catching up on being normal. But I don't know. I am first and foremost thrilled to have kept Leukemia far away for as long as we have but I am still a mom. I still struggle with comparing my daughter with other little girls and boys. There simply is no comparison. I still really, really don't like to think about that.


Perhaps, in true southern style I will mimic the great Scarlett O'Hara who said, "I cant think about that today, if I do Ill go crazy. I'll think about that tomorrow." That's how I have made it through the last almost 12 months so I think I will just stick with what works.

Saturday, September 4, 2010

coke and "crack rock" soup










I couldn't make this stuff up if I tried to. Piper was contented to lick the spout of an empty coca-cola bottle while Linley was collecting rocks and leaves to apparently cook me up some " crack rock soup". Both were happy. Both were oblivious. Dfacs will probably visit soon.

Maybe it was because I had Linley quarantined in our bedroom all (beautiful, low '80s fantastic) day long. She has a Cold. I do not have time for all that. Pipers counts should bottom out any day now, thankfully she gets a shot every night to boost her white blood cells while being Neutropenic. I am seriously praying that Linley kicks it quickly because she is not happy about having to stay away from people...and neither am I. The Georgia Bulldogs first game of the season was today and Chad and I wanted to take the girls to some of the pre-game festivities. But we couldn't. Then Chad had to work and I was beginning to feel foggy from the last of motivation. I finally broke Linley out of the room to take an hour long walk searching for paintable rocks, (aka: free and fun crafts) then the girls and I ate macaroni and cheese and coke and "crack rock soup". What sort of fun did you do today???

Friday, September 3, 2010

Inpatient chemo is done. Done. Done, Done.






We are almost there my friends. Almost to the half way point and supposedly, a little more normalcy. And that would be wonderful.

Our visit was actually pretty good. Piper was a trooper and as usual, she totally melted all the nurses and techs and anyone else who wandered into her path. She ran no fevers, and only had that same ARA-C rash that she gets every time...small red dots that travel all over her body but never seem to bother her. Piper's first night was incredibly busy as poor Nurse Heather had to be in and out all night doing vitals, chemo and eye drops. She attempted to consolidate as much as she could each visit but so much of Pipers treatments are timed...and not with sleeping as a priority. At the suggestion of Dora, Aidyns mommy, we traded out Pipers crib for a regular bed and she slept through every thing on Wednesday night, all curled up to me. So, so, so much better than sleeping in that uncomfortable chair with her on my chest all night. ugh.

We finished up with the ARA-C at about 9:30am on Thursday, waited the 3 hours to begin the last chemo infusion, peg-asparaginase, which ran for 2 hours. We then found out that Pipers hemoglobin was 7.9 and they transfuse at 8, so we knew since her blood counts were only going to drop more that she needed a blood transfusion before going home. When all was said and done we were able to leave at 7:00pm and I made it home right before Miss Linley faded off into dreamland.

Major thanks to both my mom and sister for helping me out at the hospital and major thanks to my mother in law for holding down the fort here at our home with Linley and Chad. Charlotte made this homecoming the best yet...no dishes to do, a stocked fridge, Linley all prepped for school the next day and the laundry all folded up. I cannot tell you how much of a blessing all 3 of those ladies were to our family.

So now we wait, again, for Pipers counts to drop. She will become Neutropenic (zero or close to no white and red blood cells etc) and last time this happened after this chemo she ran a fever which resulted in a nasty infection in her port line and a 9 day hospital stay. I am praying we can skip the fever this time, but truly I just want to skip the Leukemia ever showing up. As of right now, she is still feeling pretty good and surprisingly has not thrown up once since Monday.

As I have said before this was Pipers last planned hospital stay. Obviously, I am aware that she will still be required to go in for fevers and the like, but no more chemo. Praise God! She will have a sedation with chemo around the middle of the month, followed by 3 weeks of weekly Vincristine chemo at the clinic. And then Maintenance. Ahhh.

These are a few pictures that I took during our stay. I planned to take more but really, Piper keeps us moving. This is my mom, Piper and I at the entry way into the Aflac unit, Piper pushing around her favorite toy as me and my mom chase her with the IV pole,Piper noshing on some yummy curry rice, Me and Piper sleeping in a better place that the darn chair, and the last chemo hanging on the Iv pole as well as her Beads of Courage...she now has 8 strands. (You cannot see the details but each white bead is a chemo, each black bead is a "poke" or needle prick, each red bead is a blood or platelet transfusion etc...)

This is Labor Day weekend and I am hoping that Piper feels well enough for us to do some fun stuff. We can never make plans but we sure are getting good at being spontaneous. :)